Thursday, August 23, 2012


My mission:  Spend an entire day free of Fragile X……

It’s a difficult one, but I am up for the challenge.  You may ask, “Why would you want a day without Fragile X?”  Well, my response would be…because I can!  No, wait.  Because I want to try.  I am always up to a difficult challenge, and this one I knew I could do!

My first task….be sure my cell has notifications off so that I do not feel the urge to talk about Fragile X on Facebook.  I do this the night before.  Second, choose a day when I can be away from home for long periods of time (because being around “Fragile X” is a default for me having 2 sons that HAVE Fragile X).  I choose a Thursday when I have my once- a-month book club with the lovely ladies that I enjoy…and subsequently, none of them has children affected with Fragile X.  That’s a bonus.  My plan is coming together splendidly.  I decide that I will schedule a few appointments for this day, as well as lunch with a non-Fragile X friend.  Lovely.  My evil plan is working.....

Thursday arrives.  The day starts out tough.  Joe (my youngest, age 21 years) wakes us up as usual around 5:30 a.m.  Oops…I forgot about that one factor.  Oh well….I will ignore it.  Anyone that knows us knows that we follow a pretty structured routine, so this cannot possibly “count”.  There is no way to avoid this (unless I want to spend a night away…..hmmmmm, why didn’t I think of that before????).  I reach over to the bedside table and turn my cell on.  Hey! It was instinct ok!  This is what I do every single morning of every single day!  I can’t help it!  We do run a business after all, so I do have to be able to communicate.  I hear a “BLING!”  I check the phone.  It’s a text from a friend.  Ok…YES!  It’s a friend with a child that just happens to be affected by Fragile X.  What am I to do?  Ignore it?  NO!  I cannot plan this.  This can’t count either.  I must accomplish my mission!

I get myself ready for a day without Fragile X.  I shower, dress and put my face on.  I inform my husband that I will not be home until 9:00 p.m.  I get in the car and head for my first appointment (it’s a fun one).  I park the car at the Chiropractor’s office and head in.  Ooops, I forget the fact that I have 3 “X” stickers and magnets plastered to the back of my car.  Am I supposed to remove those for one day, and then remember to put them back on????  NO WAY!  It can’t count.  Oh, and the personalized license plate on my car is totally insignificant too.  I choose to ignore it.  I enjoy my adjustment and massage, and then head back to the car, being careful to ignore the rear of the car.  If I don’t see it it doesn’t exist, right?  So, I turn my head deliberately as I pass by.

I head to my lunch with a good friend.  I haven’t seen her in months, so I am quite excited!  My life has been filled with all things Fragile X so I have had little time to enjoy friendships outside of “the bubble”.  This thought pops in my head, but I quickly dismiss it.  Ok.  I didn’t say it out loud, so it doesn’t count, right?  Right.  My friend has 2 grown boys that are doing very well.  They both work, but no weddings, and no grandbabies.  Her business is thriving and she is well.  She asks about my life, and I naturally go into a whole schpeel about this conference or that.  I quickly stop myself, and then fill her in on my “mission”.  We decide that it might be best to spend some time shopping together.  Good idea!  Retail therapy is always a good cure for anything!  We spend the rest of the afternoon chatting about clothes, shoes, handbags, and other mindless things.  It was fantastic!  The hours zip by, and finally it is time to say goodbye.  We hug and we part.  It’s time for me to head to my book club.

Again, I turn my head to avoid the blatant exhibit of all things Fragile X on the rear-end of my car.  I sit in the driver’s seat and check my phone.  Oops…a text from a dear friend that has 2 kids with Fragile X.  I CAN’T IGNORE IT, OK!  She’s a friend and I offer my support when I can.  We text back and forth for a few minutes, then I start the car and head 45 minutes to the book club.  I feel a sense of comfort and warmth from my day so far. 

The group convenes at one of the member’s homes.  It is spacious and lovely with lots of light and warmth.  A welcome sight for the entire group.  The aromas from the impending meal fill the air.  I can’t wait to taste it!  We all sit and chat about the latest news for each other’s lives.  Some have young children, others are Grandmothers.  It’s a cohesive group.  Of course, one person asks me, “And, how are the boys?”.  I hesitate.  I cannot possibly avoid talking about my awesome boys when the situation arises.  I am never short on words when it comes to them.  I don’t specifically mention the words “Fragile X”, but everyone here knows my life.  It doesn’t count when it’s insinuated.  I have known these women for years, and they us.  The 3 hours pass very quickly and finally we must depart.  I slowly make my way to the car, but since it’s dark now, I don’t have to avoid the rear end.  I can’t see it anyway, so it doesn’t count.  I make my way home with the music playing softly, knowing that I have made it through another day.  

Overall, it’s been a great day.  I’m not sure if I truly accomplished my mission of a day free of Fragile X.  I certainly tried.  It took work to get it all scheduled and set aside work for a whole day.  But, I realized that my life is full of both Fragile X and non-Fragile X things and people.  I have made some of the best friends through my interaction with Fragile X, but I have maintained others that have nothing to do with it.  When my boys were young, my life was 100% Fragile X and all things that it involved.  It has evolved into a life with mixed interests and opportunities, all full of challenges and joys.  We have created a high quality life even with Fragile X, and that in itself is the prize to me.